I have spent the last year not talking about this on facebook, and discussing it with just a few close friends but it's time, I think to reach out and make it a little more public. I've been respecting my mother's privacy as I know she doesn't want her life just openly discussed, which is why I kept it private up til now.
My hope is, by sharing this, I will be able to find others going through it and make a connection, maybe to a doctor or another person who has gone through something similar. So, please, if you like, share this with anyone you think it would be helpful to and let's see if we can find some good out of this nightmare.
Our story begins in March of 2012, but really before that, you should know, my mother was a very active senior citizen. She traveled extensively and was always at work doing research, writing books and articles and spending time going to the opera in London, Paris, New York and Vienna. She walked everywhere and was very fit and active. She ate properly and did not smoke or drink excessively.
But she had this mole that was kind of bothersome, so she thought she should get it looked at. She never really had a primary doctor so she thought she would get a recommendation from my dad's diabetes doctor so she could go see a dermatologist. The guy was kind of an ass and insisted she come in for an office visit and he do a physical before he would refer. Grudgingly, she agreed. He did the physical and based on ONE blood pressure reading that was a little high, he decided she had high blood pressure and prescribed her Lisinopril.
He told her if she didn't take it, she would probably have a stroke.
So, she took it.
And immediately, she began to have bad side effects.
She coughed, was exhausted but couldn't sleep, dizzy, nauseated, short of breath.
After a few days she called him and reported these symptoms.
He said "Okay, take some Losartran"
She went and got those pills and took them and the side effects were even worse.
She called him back.
He said "Just keep taking the Lisinopril until it doesn't bother you any more and your body will get used to it. But don't STOP taking it because you WILL have a stroke"
So, she kept taking it.
And we all noticed and said "Hey, that medication seems to be making you sick" and we looked for alternatives and gave her other suggestions and asked her to stop taking the drug.
But that asshole doctor had scared her very badly and she was trying to follow his orders.
(During this time she saw the dermatologist and the mole was nothing to worry about)
She kept taking this drug for a month. And she got sicker and sicker. She began to have severe pains in her upper arms and upper legs. She coughed persistently, she was always short of breath, exhausted. I looked at the list of side effects. She hit every one. She started to get a very bad rash on her her chest and face.
Go back to that doctor! We said. Tell him what is going on.
He wouldn't even see her. He sent her to a nurse practitioner who dismissed every complaint and handed her another blood pressure medication prescription.
I wish I had gone with her to that visit.
We all agreed that she should stop taking Lisinopril and get a second opinion. She stopped. She didn't have a stroke, she just didn't get better. She got worse. She was so exhausted and in so much pain, she couldn't sleep or function. We decided to get a second opinion.
I started looking for doctors and my dad called his heart doctor.
She got in to see him very soon and he immediately knew something was terribly wrong. He got her admitted to the hospital for testing and the doctors were very confused for several days. Finally, they sent in a rheumatologist who did a muscle biopsy of the muscle in her arm. Her muscle was necrotic. It was dying. I freaked when I heard this.
Can she recover? Will she get better?
They said she could and she probably would. They diagnosed an autoimmune disorder called "dermatomyositis" and put her on Prednisone. She went home for a few days and did not get any better, so she returned to the hospital and they put her on IV Prednisone. At this time, she was still mobile. I could pull her to her feet and she could walk on her own. After a few days in the hospital, she got better enough to come home. The doctor had said - Liquid diet- as she was afraid my mother's swallow muscles were not strong- she wanted my mom on a feeding tube but my mom refused. It was another thing that was not explained well by the doctors.
Her muscle enzymes were high, her creatine levels were elevated and her body was attacking itself.
We were all thinking she was just going to get better now because they gave her steroids. I'm afraid they did not explain well, gave us unclear expectations and were generally leaving us unprepared and badly advised. We took her home thinking she would get better. NO ONE told us that it was going to take weeks for her muscle enzymes to return to normal and then once they did, it was going to take another four weeks of her body being at normal creatine levels for the muscle recovery to begin.
She went home. The physical therapist came to the house ONE time, labeled my mother as uncooperative and never returned. No one knew this. My father put the list of exercises under a stack of papers and never did them with her. Meanwhile, my mother got worse and worse. Her swallow muscles began to fail and within about a week, she began to choke on everything. She refused to eat anything but cream of chicken soup and cream of tomato soup. She got weaker and weaker and started feeling terrible. She could barely swallow her daily Prednisone pill. She began to lose the ability to walk.
It took two of us to take her to the bathroom, she could barely support herself.
I was out of town for a week and when I returned, she was in terrible shape.
It all happened slowly and we finally had a family meeting and agreed we needed help and some kind of rehab program. There was a nurse coming once a week. My mother had become deeply uncommunicative and would sit for hours and stare. She wouldn't do anything, saying she was too tired to eat or do her exercises. After I discovered that physical therapy had abandoned her, I tried to do her exercises with her until we could get her better help.
I got her protein shakes but she could barely drink without choking.
Finally a nurse showed up and informed us we needed to call an ambulance because she had pneumonia. It was very, very bad. We had no clue she was so sick. The prednisone repressed any fever and we had no idea what this looked like.
She was in the hospital for a month starting with ICU and three drains in her right lung. Her right lung was encased and both were full of all the food she had aspirated into her lungs. We felt terrible for trying to get her to eat. We felt terrible for not knowing. We all sat by her bedside every day.
She pulled through it all. We were amazed and grateful.
I worked very hard to find a good rehab and I did. She was eligible for 100 days of medicare rehab and after about five weeks in the hospital, we moved her to skilled care rehab. She started doing really well very soon. The first few days, they had her standing. By the end of eight weeks, she was walking with a walker. She was now on a feeding tube that she had inserted in her stomach but was working with speech therapy to get her swallow muscles recovering.
This brings us to the end of part one of this story.
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